OMG Ed, This on top of everthing else you are dealing with. It is sad that the only treatment of this rotten disease takes what were otherwise perfectly happy, healthy individuals and makes them sick as a dog. Then sometimes leaves them with permanent side effects like yours. Life is just not fair.

I hope you enjoyed your birthday and may you have many more.

Take care,
Eileen

I too have been in misery for 14 months. i have been told my itching head and electrical sensations are probably from the drug cetuximab. i was one of the first to have this target therapy drug instead of cisplatin. it is supossed to be less toxic? i am also experiencing severe cramp at the back of my head down both sides of my neck and under my chin. i did not have any surgery apart from the removal of my tonsils. my GP said he thinks it is stress? having read your post, it is more likely to be from the radiation. i am experiencing a very red scalp, hair loss and this terrible itching. my jaw has also gone very stiff. this all happened at around the same time 14 months ago and is not improving.

Ed now that is like the lump I have on my left shoulder on the muscle or collar bone. Take your pick. The Docs look at it , and feel it, make it hurt more and don't say much. Could probably use it for a golf ball if I run out.

I blew it again. dang it,, it's the right side not left. LOL Man what a ditz.

I did not have the ND, but have the cramping on the left side of my neck and in the back of my head and down the back of my neck. Sometimes I think I will scream! That plus the L'Hermittes sign, the shocking sensations in my hands and legs, is about too much. And when I exercise or stretch my neck, the shocks get worse and go further down my legs. It makes it interesting trying to start an IV on a patient and not bend my head forward so I won't get shocked! Oh that gift that keeps on giving!!

[quote=JeffL]I just had rather lengthy discussion with doctors at the James and from Vanderbilt about this issue. Everyone here is correct, to an extent. The radiation fibrosis causes stiffness and thickening of the tissues, which can a) provide a superficial tightening, and b) exert pressure on adjacent nerves. The nerve damage from the neck dissection is an independent comorbidity, particularly if Level V nodes were removed. Both the Spinal Accessory Nerve and branches from the brachial plexus can be involved, as they travel through the SCM, scalene and trapezius muscles.

I have all of the above, and just started an exercise regimen to improve range of motion and hopefully reduce stiffness. [/quote]

I know we are not supposed to mention doctor names but if you happen to run into Dr "S" at Vandy (the tall one that probably still wears the high waters) how much I miss him from UT Southwestern. Tell him Ed said hello!

[quote=Eileen]OMG Ed, This on top of everthing else you are dealing with. It is sad that the only treatment of this rotten disease takes what were otherwise perfectly happy, healthy individuals and makes them sick as a dog. Then sometimes leaves them with permanent side effects like yours. Life is just not fair.

I hope you enjoyed your birthday and may you have many more.

Take care,
Eileen [/quote]

Thanks, Eileen. Funnny how sometimes for months on end I just think of them as "signs of life". I think the pain from the burns and only sleeping an hour at a time is taking a toll on me and I really think the 20 hour days were my personal "last hoorah" and really took it's toll on me. All the side effects got worse by the week before the long days, though, and that was part of my motivation to go for it.

Ed

[quote=Kathi G]I did not have the ND, but have the cramping on the left side of my neck and in the back of my head and down the back of my neck. Sometimes I think I will scream! That plus the L'Hermittes sign, the shocking sensations in my hands and legs, is about too much. And when I exercise or stretch my neck, the shocks get worse and go further down my legs. It makes it interesting trying to start an IV on a patient and not bend my head forward so I won't get shocked! Oh that gift that keeps on giving!! [/quote]

I really got a kick out of the "temporary" side effects as they said never went away. The L'Hermittes, the ringing in the ears, the tightness and pain in the jaw, the cramps...

Once the fisculations started and the constant twitching worsened I went to a neurologist and after almost 3 hours of sticking this 4 inch needle through my neck, shoulder muscles, even through the bottom of my chin and through my tongue, they told me I don't follow the normal pattern of arterio something post radiatin neuropathy syndromeor something like that and one of them told me not to worry it would probably go away soon. I reviewed the study and everyone else exhibited the same symptopms only five years later at 45 grays max of radiation. At least I know what it is and there is nothing to do but try a valium and vicodin when I want my neck to settle down enough to get a little sleep. If the burns would heal a bit, that might start working again.

I actually like to go for my checkups and I work the crowd pretty good because I can see the newbies and the fear. I remind myself how man are so much worse off and I get a chance to provide a little comfort to people whose lives were just thrown into a tailspin.

Ed

Hi all,
Martin gets the cramping which is pulling him to the left and forward and makes his head feel really heavy. he gets the itching and pains at the top of his head. We were told the itching and the head pains were due to nerve damage and the nerves slowly repairing. It should improve but there is no telling when, the age old phrase of "every one heals differently". We are waiting for an appointment witht the physio who should suggest stretching exercises. I asked about pilates, but the physio wants to see Martin first and then maybe after he can try Pilates, which should help re-align his posture. It's such a long healing process. Oh Martin also gets lock jaw sometimes when he yawns, and it scares him every time. He has to shut his mouth with his hand when it happens.
I will update you after we have seen the physio and see what she says, maybe she'll have some tips.
Godd luck and hang on.
Love C

Second time it happened to me in a few days, and all I had to do was search for cramps. Good to know it's not my tongue falling off. But it was so excruciatinly painful! What exercises were recommended to those of you who saw therapists? My nurse keeps saying to remember and turn the head from side to side, which I do, but I don't know if these things are related.